Recruitment for genetic studies of epilepsy

Epilepsy Research

Volumn 101, Issue 1-2, 2012, Pages 122-128

  Misiewicz, Sylwia ^a   Winawer, Melodie R ^b  

^a Vagelos College of Physicians and Surgeons   (United States)

^b Och Spine at New York Presbyterian Hospitals   (United States)

Author keywords

Epidemiology; Epilepsy; Genetics; Participation; Recruitment; Temporal lobe

Indexed keywords

DNA;

ADULT; ARTICLE; BLOOD SAMPLING; COMPENSATION; CONFIDENTIALITY; DNA EXTRACTION; FEAR; FEMALE; GENETICS; HUMAN; INTERVIEW; MAJOR CLINICAL STUDY; MALE; MEDICAL RECORD; MONEY; ONSET AGE; PATIENT EDUCATION; PATIENT PARTICIPATION; PHLEBOTOMY; PRIORITY JOURNAL; SAMPLE SIZE; SCREENING; SEIZURE; TEMPORAL LOBE EPILEPSY; UNIVERSITY HOSPITAL;

ADULT; DATA COLLECTION; ELECTROENCEPHALOGRAPHY; EPILEPSY, TEMPORAL LOBE; ETHNIC GROUPS; FAMILY; FEAR; FEMALE; HUMANS; INFORMED CONSENT; MAGNETIC RESONANCE IMAGING; MALE; PATIENT SELECTION; PHLEBOTOMY; QUESTIONNAIRES;

EID: 84865077198     PISSN: 09201211     EISSN: 18726844     Source Type: Journal    
DOI: 10.1016/j.eplepsyres.2012.03.011     Document Type: Article

References (32)

1. Baulac S., Picard F., Herman A., Feingold J., Genin E., Hirsch E., Prud'homme J.F., Baulac M., Brice A., Leguern E. Evidence for digenic inheritance in a family with both febrile convulsions and temporal lobe epilepsy implicating chromosomes 18qter and 1q25-q31. Ann. Neurol. 2001, 49:786-792.
2. Bentley J.P., Thacker P.G. The influence of risk and monetary payment on the research participation decision making process. J. Med. Ethics 2004, 30:293-298.
3. Bhatti P., Kampa D., Alexander B.H., Mcclure C., Ringer D., Doody M.M., Sigurdson A.J. Blood spots as an alternative to whole blood collection and the effect of a small monetary incentive to increase participation in genetic association studies. BMC Med. Res. Methodol. 2009, 9:76.
4. Dlugos D.J., Scattergood T.M., Ferraro T.N., Berrettinni W.H., Buono R.J. Recruitment rates and fear of phlebotomy in pediatric patients in a genetic study of epilepsy. Epilepsy Behav. 2005, 6:444-446.
5. Doody M.M., Sigurdson A.S., Kampa D., Chimes K., Alexander B.H., Ron E., Tarone R.E., Linet M.S. Randomized trial of financial incentives and delivery methods for improving response to a mailed questionnaire. Am. J. Epidemiol. 2003, 157:643-651.
6. Engel J. Mesial temporal lobe epilepsy: what have we learned?. Neuroscientist 2001, 7:340-352.
7. Galea S., Tracy M. Participation rates in epidemiologic studies. Ann. Epidemiol. 2007, 17:643-653.
8. Groves R.M., Cialdini R.B., Couper M.P. Understanding the decision to participate in a survey. Public Opin. Q. 1992, 56:475-495.
9. Haddow G. " We only did it because he asked us": gendered accounts of participation in a population genetic data collection. Soc. Sci. Med. 2009, 69:1010-1017.
10. Hara M., Higaki Y., Imaizumi T., Taguchi N., Nakamura K., Nanri H., Sakamoto T., Horita M., Shinchi K., Tanaka K. Factors influencing participation rate in a baseline survey of a genetic cohort in Japan. J. Epidemiol. 2010, 20:40-45.
11. Hauser W.A., Annegers J.F., Kurland L.T. Incidence of epilepsy and unprovoked seizures in Rochester: Minnesota: 1935-1984. Epilepsia 1993, 34:453-468.
12. Hedera P., Blair M.A., Andermann E., Andermann F., D'agostino D., Taylor K.A., Chahine L., Pandolfo M., Bradford Y., Haines J.L., Abou-Khalil B. Familial mesial temporal lobe epilepsy maps to chromosome 4q13.2-q21.3. Neurology 2007, 68:2107-2112.
13. Hwang S.K., Hirose S. Genetics of temporal lobe epilepsy. Brain Dev. 2011, 10.1016/j.braindev.2011.10.008.
14. Johnson V.A., Edwards K.A., Sherman S.L., Stephens L.D., Williams W., Adair A., Deer-Smith M.H. Decisions to participate in fragile X and other genomics-related research: native American and African American voices. J. Cult. Divers. 2009, 16:127-135.
15. Kaufman D., Murphy J., Scott J., Hudson K. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet. Med. 2008, 10:831-839.
16. Kirkland S.A., Raina P.S., Wolfson C., Strople G., Kits O., Dukeshire S., Angus C.L., Szala-Meneok K., Uniat J., Keshavarz H., Furlini L., Pelletier A. Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada. Can. J. Aging 2009, 28:231-242.
17. Mefford H.C., Muhle H., Ostertag P., Von Spiczak S., Buysse K., Baker C., Franke A., Malafosse A., Genton P., Thomas P., Gurnett C.A., Schreiber S., Bassuk A.G., Guipponi M., Stephani U., Helbig I., Eichler E.E. Genome-wide copy number variation inepilepsy: novel susceptibility loci in idiopathic generalized andfocal epilepsies. PLoS Genet. 2010, 6:e1000962.
18. Murphy E., Thompson A. An exploration of attitudes among black Americans towards psychiatric genetic research. Psychiatry 2009, 72:177-194.
19. Murphy E.J., Wickramaratne P., Weissman M.M. Racial and ethnic differences in willingness to participate in psychiatric genetic research. Psychiatr. Genet. 2009, 19:186-194.
20. Ottman R. Genetics of the partial epilepsies: a review. Epilepsia 1989, 30:107-111.
21. Ottman R. Progress in the genetics of the partial epilepsies. Epilepsia 2001, 42(Suppl. 5):24-30.
22. Ottman R., Berenson K., Barker-Cummings C. Recruitment of families for genetic studies of epilepsy. Epilepsia 2005, 46:290-297.
23. Ottman R., Hauser W.A., Stallone L. Semistructured interview for seizure classification: agreement with physicians' diagnoses. Epilepsia 1990, 31:110-115.
24. Ottman R., Lee J.H., Hauser W.A., Hong S., Hesdorffer D., Schupf N., Pedley T.A., Scheuer M.L. Reliability of seizure classification using a semistructured interview. Neurology 1993, 43:2526-2530.
25. Ottman R., Lee J.H., Hauser W.A., Risch N. Aregeneralized and localization-related epilepsies genetically distinct?. Arch. Neurol. 1998, 55:339-344.
26. Ottman R., Lee J.H., Risch N., Hauser W.A., Susser M. Clinical indicators of genetic susceptibility to epilepsy. Epilepsia 1996, 37:353-361.
27. Remington T.D. Telemarketing and declining survey response rates. J. Advert. Res. 1992, 32:Rc6-Rc7.
28. Rylander-Rudqvist T., Hakansson N., Tybring G., Wolk A. Quality and quantity of saliva DNA obtained from the self-administrated oragene method-a pilot study on the cohort of Swedish men. Cancer Epidemiol. Biomarkers Prev. 2006, 15:1742-1745.
29. Schleifer S. Trends in attitudes toward and participation in survey research. Public Opin. Q. 1986, 50:17-26.
30. Vadlamudi L., Scheffer I.E., Berkovic S.F. Genetics of temporal lobe epilepsy. J. Neurol. Neurosurg. Psychiatry 2003, 74:1359-1361.
31. Winawer M.R., Rabinowitz D., Barker-Cummings C., Scheuer M.L., Pedley T.A., Hauser W.A., Ottman R. Evidence for distinct genetic influences on generalized and localization-related epilepsy. Epilepsia 2003, 44:1176-1182.
32. Winawer M.R. Phenotype definition in epilepsy. Epilepsy Behav. 2006, 8:462-476.